Tag: LAM

Knitting and Anxiety

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August 24th 2022

As Zoë wrote in her book, 90% of TSC suffers can expect to develop mental problems, and anxiety is just one of them. It’s not surprising that it was such a big problem for her. Faced with first one, and then two, rare medical conditions, anyone would be come anxious about ‘upcoming appointments, medication or fears of becoming unwell’.

However, Zoë’s anxiety began, not worrying about her own health, but that of her dearly loved Granny, who after a heart attack, developed ovarian cancer.

She wrote in January 2010: Prior to this, I had never needed to prepare myself for losing a relative, but it caused more anxiety than I would have ever imagined. This led to her first panic attack which resulted in her worrying about having one again and created a vicious cycle of recovery, worry and anxiety.

In 2012, she began her photography degree course in London with its stressful course deadlines, and wrote:

It was around this time when I began learning about mindfulness and how the worries we often have relate to what we have done in the past or what we are concerned about in the future. I was certainly worried something awful may happen to me in the future which I was trying to prevent that through worrying. By using mindfulness, I learnt that knitting is a great way to promote relaxation in the present moment while doing an activity.

Photo Zoë Bull 2013

I had already taught her some basic garter stitches, and the next year she began making a patchwork blanket for her new niece or nephew, expected in May.

Knitting had helped her but, her anxiety got gradually worse, and our GP, Dr Keast, referred her for Cognitive Behavioural Therapy (CBT) which helps to resolve negative thinking patterns into a positive mindset. Although Zoë felt she was a failure asking for help, the therapist was kind and discussed the results of a score sheet she had filled in and diagnosed that she had General Anxiety Disorder (GAD). With a guided relaxation CD and a CBT Workbook to take away, there were weekly phone calls for the next six weeks. Through these, Zoë found that ‘setting goals could be a helpful way of improving my wellbeing’, she also discovered that her efforts to control anxiety were actually avoidance techniques to deal with the worries she had about her health. As a result, she was given a Health Anxiety Workbook which helped her explore her thoughts and actions and their affect on her anxiety, and from this she would always deal with new health problems by writing her own step by step process, e.g. of how she would get used to being in the outside world after shielding for four months.

However, knitting continued to be something Zoë turned to to be calm and mindful.

Back to Mencap, August 1st 2020

For further information on TSC-Associated Neuropsychiatric Disorders (TAND) visit https://tuberous-sclerosis.org/for-professionals/2022-tandem-seed-grant-award-round/

Zoë at Mencap 2016 to 2021

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June 30th 2022

Zoë was so proud of her job as a Support Worker at Mencap, helping men and women with learning disabilities and empowering them to lead independent lives. This picture shows that even through Lockdown, when not only were the people she looked after shielding from COVID, she was as well, and although she couldn’t go in and be with ‘Callum’, the man she supported, she phoned him every Tuesday and Saturday afternoon to keep in touch. Here she is ready to make her call.

She was very keen to encourage all the people in the house to develop their independence, and do as much as they could unaided. One driving force behind this was the example set by her schoolfriend, Helen, who suffered from Cerebral Palsy, to achieve as much as she could, and of course, Zoë’s own determination to live her life as fully as possible.

In a letter to Mencap to explain why she couldn’t attend her second interview because of her lung collapsing, she wrote:

‘Paying attention to how the nurses work with the patients has inspired me even more to help others develop their independence.‘

She was offered the job, giving her a ‘small glow of happiness inside‘, and then returned to Guy’s to have a planned pleurodesis to stick her lung to her chest wall to prevent it collapsing again. But, due to complications, she was in hospital for most of May, and on writing to Mencap again, they offered put her application on hold without affecting her employment.

Zoë’ wrote: ‘Considering I had that horrible trial shift at that café back in March, the situation now couldn’t have been more different. I felt supported and respected; that my ill health was being taken seriously and Mencap were being patient enough to wait for me to fully recover before they were happy for me to start work.‘

This shows how supportive Mencap were, not only to their clients, but also to their staff, giving Zoë the opportunity to get that job and be proud of herself as a member of the working world.

As she said, ‘The experience has helped me become more accepting of people with TS, who may have learning disabilities too.’  And it helped her to reach that self-acceptance that she was striving so hard to find.

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One Year Since the Publication of RARE

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May 20th 2022

Since Zoë’s book was published last May, it’s been well received and read all around the world and has really helped people find out more about TSC and how Zoë lived her life with it.

She always wanted to share her experiences and wrote several articles for the TSA Scan Magazine, and also a piece for the TSA 40th anniversary event at The Oxford Belfry in September 2017 which is shown above and a bit clearer here, below.


Zoë wrote about the difficulty of living with TSC when on the outside she appeared quite normal with a degree and a job, whilst inside, she was worried that society would try ‘to pick out something wrong with me’, like her imperfect complexion. She likened it to having a ‘double life’: the independent one of work and socialising, and the traumatic one of having TSC and clinic appointments. She said it felt horrible to to recognise that ‘I may not always be normal’, but she was grateful for all the medical support that she received.

However, she could see that this ‘double life’ meant that she could use all her skills and knowledge from both areas of her life and combine them into ‘something great’ in her work with Mencap. And she was so happy that they didn’t know there was anything wrong with her, she was ‘just Zoë, their support worker and key worker’.

Always optimist, she said that although TSC and LAM had resulted in some ‘tumultuous experiences’ for her, ‘many good things have come out of it’.

One of these things was the knowledge and experience that enabled her to sit down and write her book. The sad thing is that she never lived to see it published, although we edited it together and she chose the cover photos. I wish she could have seen it and held it in her hands. She would have been so very proud.

July 2020 Zoë Finishes Her Book

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July 5th 2020

In July 2020, Zoë had finished writing her book, and to celebrate she found this flash card she used for counselling to pose for a picture. It says, ‘I feel a wave of enthusiasm for my achievements’, above a smiley face, and below that is says, ‘PROUD’.

She had put such a lot of hard work into writing it, not only revisiting her past and facing up to all the challenges she’d been through having Tuberous Sclerosis and LAM, but researching about those conditions to inform families and people affected by them, and the general public who probably had never heard of TS and LAM. We hadn’t until she developed them either . . .

On her way, she was supported by Dr Sam Amin who ran the Metformin trial at the Bath TSC clinic, which Zoë took part in. He kindly wrote the Foreword, and said:

‘I recall her positivity and determination not to be defined or limited by the condition which affected so many aspects of her life’ . . . ‘I cannot stress enough how important Zoë’s coping mechanisms have been in surmounting all the hurdles she has been faced with’ . . .’Zoë’s book has given me a deeper insight into TSC, from a different angle’.

Zoë also had the kind support from TSA CEO, Louise Fish, who read through the book before it was published, and Gill Hollis and Professor Anne Tattersfield who proof-read the sections on LAM.

Yes, she was so proud that she had got to the end, and we are very proud of her for writing it.

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Zoë the Photographer 2

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April 2016 1920’s Gala Evening

Zoë had been invited to take individual photos of everyone at the 1920’s Gala Evening to celebrate 20 years of Outlook, the special group for those mildly affected by TS. Again, she felt apprehensive, but was welcomed at the Oxford hotel, by a founder Outlook member she had met the year before. Another founder member talked about how Outlook had changed her life by giving her a positive outlook, and how she had learned to accept herself for who she was, which made Zoë reflect on how she had been learning to accept herself too.

She was pleased that her dad went along in the evening to help her set up the equipment and act as her assistant, and before she started her session, he took a photo of her in front of the grand staircase backdrop. Everyone was pleased with their photos which appeared in the Summer 2016 Scan Magazine with the comment that ‘A fun photoshoot by volunteer photographer, Zoë Bull, added a spot of glamour to the proceedings’. She loved her own photo so much that she put it in a pretty pearl frame and kept it on her printer.

I was so proud of it that I showed it to my friend who had brought round some dolls she had crocheted. I asked her if she could possibly make a one like the picture for Zoë. It’s amazing that she did it just by taking a few photos as a guide.

Although I actually forgot to give it to Zoë on Christmas Day, she was really pleased when she opened it on Boxing Day. The only thing she wanted me to do was to embroider on a smile which I happily did. The 1920’s Gala Evening had been a great success for her and had helped her on her journey to self-acceptance.

Zoë the Photographer

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January 2015 Cover Girl!

In the last months of Zoë’s degree in Photography, she realised how much of her work was psychology related. She was beginning to be fascinated by the mind, and explored that in her coursework, images and essays. She couldn’t see herself as a business woman and saw herself more as someone who helped people with their problems. Her problem, though, was telling us! But we have always believed that our children should be encouraged to pursue what they wanted; not to be forced into anything, so she was surprised when we said it was all right not to become a photographer after all.

In 2014, just after her 21st birthday, she wrote her story of living with TS, and sent it in to Share Your Story on the TSA website. She wrote in her diary about how she hoped to use her normality to create a bridge between TS people and non-TS people. ‘I just hope it inspires’.

But the months went by with no response, and she considered becoming a TS volunteer instead. Perhaps she could make use of her photography skills there? Her first assignment was to take photos of all the staff on the TSA Staff Day to use in the TSA Scan Magazine. She wasn’t used to taking photos of new people, but when some said they didn’t usually like having their photos taken either, she realised that they had their insecurities too, and she felt better.

After several months coping with her first lung collapse, she was cheered by being asked to do a telephone interview about her story by Isobel, the TSA magazine editor, who also requested a photo of her for the front of the magazine!

Here it is. Her journey as a TSA Volunteer photographer had begun!

A Kidney Bleed and Embolisation

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November 15th 2013

Here is the photo our neighbour, Betty, took of Zoë because she said she was looking so well after suffering a kidney bleed a few months before.

As Zoë reflected in RARE,

‘Looking at the photo, I can really see the colour in my cheeks, compared to the photo Mum and Dad took of me the day after my embolisation. I take that as a good sign that I’m looking and feeling better.‘

August 13th 2013

She had been through so much in those past three months: a terrible pain in her back had revealed itself, after blood tests and a CT scan, to be a kidney bleed resulting from the rupture of one of her renal angiomyolimpomas (AMLs). We were very grateful to Dr Amin at Bath who was able to liaise with the doctors at the Royal Berkshire Hospital, and advise them that an embolisation was the best course of action instead of removing the kidney because she may need it in the event of another renal AML on the other side.

The embolisation was done under sedation and a local anaesthetic, and took several hours. She had lost a lot of blood and needed a transfusion. However, even though she was sent home a couple of days later, her digestive system shut down, and her stomach swelled up so she had to go back into hospital to go on a drip to get things moving. All in all, she had lost three stone and had become anaemic, and it took several months before she was totally back to normal.

As she learnt later, these Renal AMLs were connected to LAM (Lymphangioleiomyomatosis) because of the increased levels of oestrogen as she entered her twenties, and this was to have a profound affect on her life.

Local Coffee Morning Raises Nearly £300 for TSA

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July 31st 2021

A big thank you to Julie Huntingdon and her team of helpers who held a coffee morning at the Whitchurch Art Café and raised £297 for the TSA, plus the sales of Zoë’s book which raised £60, split between the TSA and LAM Action as she had wished. A reporter even visited and it appeared in the local paper, resulting in even more book sales.

Thank you too, to our local community who got behind this effort and made it such a success.

Kidney Embolisation

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August 12th 2013

In August 2013, at the age of 20, Zoë suffered a kidney bleed, but there was no obvious bleeding, just a terrible pain in her side. We had no idea it was so serious and took her to an osteopath who sent us off to A&E where Zoë was assessed. She had a CT scan which showed her right kidney was bleeding internally. It was lucky we were there, because the normal procedure would be to remove the kidney but, for TSC patients, embolisation is recommended to preserve what’s left of it in case there is another bleed on the other side. We were able to contact Dr Amin at Bath who liaised with the doctors about what was to be done in Zoë’s case.

Although the embolisation was successful and she was sent home, Zoë’s digestive system shut down with the shock, and she became very bloated and uncomfortable, so she had to go back into the Royal Berks for several days to go on a drip until that was put right.

She had lost 3 stone, and her haemoglobin was very low, so she was given some iron tablets and told to eat lots of calorific snacks, something that she had avoided to keep healthy!

The photo above shows her at the Newbury Show five weeks later. Nothing was going to stop her going on her favourite annual day out, and you can just see that she is sitting in a wheelchair. She had been through such a lot.

It wasn’t until 2014, when she was diagnosed with LAM, that we became aware of the connection between kidney bleeds, oestrogen and LAM: her hormones had kicked in at the start of childbearing age, resulting in the bleed.

Coping with Facial Angiofibromas

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July 13th 2010

These photos of Zoë show her at seventeen and eighteen. In the first one on a Eurocamp holiday, she is happy and relaxed and doesn’t seem bothered by her Facial Angiofibromas. This is a far cry from the four-year-old Zoë who had the traumatic experience of having her face paint removed by an anxious campsite children’s courier who thought she was having an allergic reaction, and the schoolgirl Zoë who had to bear the unkind remarks of other children and, the discomfort of some laser treatment. As she got older, she tried to cover the raised red marks with foundation, but found that it just emphasised them, so concentrated on emphasising her good points: her eyes and her lovely smile instead.

In the second photo the following July, she has been made-up for her sister’s wedding. Although she looks happy here, she would much rather have not had that gloopy foundation drawing attention to her skin.

During the subsequent years, she began to give up make-up altogether, helped by the beneficial effects of the medication she was taking for LAM on her facial rash.

‘Without make-up I feel liberated and genuinely beautiful despite my ever-present flaws,’ she wrote in her book. And she was.

This was a significant step on her journey of self-acceptance.

Singing

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June 30th 2011 – Zoë was awarded her Grade 6 certificate for Popular Music Performance with Merit.

Zoë loved singing right from when she was little. I used to sing her songs in the bath and she would sing them straight back to me in perfect pitch, sounding far better than I ever had.

She loved singing in class assemblies, and in the Christmas plays at school. She also loved singing in the Christingle service which she took part in a few times. Once when she played the part of a child from China, she insisted I took her to the Disney Shop to buy her some Mulan pyjamas to look the part!

At secondary school, Zoë joined a singing group with some of her friends, called Octava. They sang in concerts at school under the talented direction of Marion Nicolosi who would often join in and sing with them.

In later years, they would regularly meet up at a care home with Marion to sing carols to the residents each December – although Zoë always wished her medication didn’t prevent her from drinking the sherry they were all offered! It is interesting that, despite having LAM, she was still able to sing, and sustain long notes.

We kept singing at home in the kitchen, especially to Paul McCartney, and at Christmastime we would turn down the lights and sing and dance to our favourite Christmas CDs.

Last Christmas we decided that if the Christmas cruise we’d been talking about for 2023 came off, and anybody wondered where we were, they would find us in the Karaoke bar, singing along to our favourite Christmas hits.
This year, I’m going to get everyone to sing along with me in the kitchen in her honour.

Harriet’s Journey

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June 2019

‘Hi, I’m Harriet, 26, and I met Zoë through having Lymphangioleiomyomatosis (LAM). To rewind, I was first diagnosed with angiomyolipomas (kidney tumours) when I was 17, with no prior issues with my health. I had no idea what it meant and it was completely terrifying to go through this experience as a teenager. To make things worse, I had to go to the doctors EIGHT times before anyone would refer me for a kidney scan, bearing in mind I was suffering from flank pain and acid reflux. Many doctors told me I was a teenage girl with stress and anxiety, claimed I was gluten intolerant and also blamed it on my periods; one doctor even said ‘I’ll eat my hat if there’s anything wrong with you’. It was an extremely stressful time in my life. After I had the angiomyolipoma diagnosis, I had an embolization in the summer and suffered no more issues for a very long time. Seven years later, I suffered a severe pain in my shoulder and breathlessness, and after being admitted to A & E, I was confirmed to have had a pneumothorax (lung collapse). This required a chest drain with subsequent surgery to prevent the lung from collapsing again. After noticing cysts on the CT scan, doctors believed it was LAM, and referred me to Nottingham, where I was later confirmed to have sporadic LAM.

Thankfully, I was introduced to LAM Action immediately, and only four weeks after my surgery, I went to the LAM conference in Watford in 2019. This is where I met Zoë. Zoë was one of the only women there who had LAM who was also my age. I immediately noticed what a calm and gentle person she was, and I was drawn towards her as I felt comfortable around her. I was very anxious about the things I may have heard on that day, as I hadn’t done any prior research about LAM, even though I was just diagnosed. Even though Zoë also had TSC, we had very similar experiences, being the angiomyolipomas and the pneumothorax in our young adult lives. Zoë made me feel reassured that although we were very unique, being diagnosed with such a rare disease, that it was not all doom and gloom, and we must make the most of what we are able to do. 

Before meeting Zoë, I was truly scared that I would not be able to go back to ‘normal’. I was always very sporty and active, and lived life to the full. After the conference and meeting Zoë, my confidence slowly began to build, and my recovery was made a lot easier due to the positive influences I received on that day. Shortly after, the COVID pandemic hit and we were unfortunately unable to resume any LAM meetings, with most of us required to shield. Thanks to Zoë, a young person’s virtual meeting was set up in order to provide support to those with LAM. This meeting was very successful, reminding us that we were not alone in our journey with LAM, and it was so good to hear that we were all there to support each other, with those truly understanding what we’ve all been through. It was so great to hear Zoë was so excited and driven to write her story, and I am looking forward to reading her book. She was always so kind, thoughtful, positive and there are so many more lovely things I could say about her. I was so sad to hear of her sudden passing and it has been hard losing somebody I have shared so much in common with, especially being so extremely rare. I know she will be truly thrilled that her book has been published.

I would say to anybody newly diagnosed with this condition to not believe everything you read online, and try to only look at reliable and recent information. There has been a substantial improvement in the way LAM is managed and understood. I would also encourage everyone to believe in themselves, I truly think keeping positive is so important in the way we deal with things and seek support if you ever need it. I know we have our bad days, our struggles and sometimes things feel so frightening and unbearable. But these days don’t last forever. I have achieved a lot more than I ever thought since I was diagnosed. I stay active, going outdoors and enjoying the fresh air. I also go to the gym and I am training for a 10km Wolf Run (https://thewolfrun.com) this July. Having LAM is scary and daunting, but I can assure you the good days outweigh the bad. Always surround yourself with positive people, and just keep taking a few more steps everyday. We are all in this together, and we must always support each other. 

To Zoë,

I am so glad that I had the honour to meet you and to receive your positive influence. You achieved so much in your life despite all the challenges you faced and I can’t wait to read your book. I am so grateful for your contributions to LAM Action and the LAM community.

Harriet